Genetic Alliance UK are looking for patients and their families who would be willing to take part in a new study, My Condition, My DNA and we’re hoping that the Behcets Syndrome Society might be able to help us find them.
A new way of reading our genes means that it is becoming faster and cheaper to sequence large amounts of genetic information. At the same time, researchers are finding out more about how our genes can affect our health and how we can use this information to improve healthcare through better diagnosis and treatment. We want to understand what patients affected by genetic conditions and their families think about the use of genomic sequencing in the NHS as it raises many societal and ethical issues. For example, what happens if you find out information about your health that you weren't expecting? Who has access to your genetic data?
My Condition, My DNA will use a series of interactive sessions, which participants can take part in from the comfort of their own home, to find out what patients and their families feel about the use of genomic sequencing in the NHS. The findings of this research will be fed straight back to those making decisions about how genomic sequencing could be used by the NHS in the future in the form of a ‘Patient and Family Charter’.
Genetic Alliance UK hopes that you’ll be able to help us recruit patients and families who may want to help us with our study. Please take a look at our recruitment flyer ( raredisease.org.uk/document... Documents /recruitment_flyer.docx ) that contains more information about My Condition, My DNA and the participant registration form ( raredisease.org.uk/document... Documents /participant_registration_details_form.docx )
If you have any questions about this project then please feel free to contact Alice at firstname.lastname@example.org or 020 7704 3141.